Symptoms of neuroblastoma

The symptoms of neuroblastoma vary depending on where the cancer is and whether it has spread. The early symptoms can be vague and hard to spot, and can easily be mistaken for those of more common childhood conditions.

Symptoms can include:

a swollen painful tummy, sometimes in association with constipation and difficulty passing urine

breathlessness and difficulty swallowing

a lump in the neck

blueish lumps in the skin and bruising, particularly around the eyes

weakness in the legs and an unsteady walk, with numbness in the lower body, constipation and difficulty passing urine

an mIBG scan – this involves the injection of a substance taken up by neuroblastoma cells

a biopsy – the removal of a sample of cells from the tumour tissue for examination under a microscope so the type of cancer can be identified; the sample is usually removed under general anaesthetic using a special needle

bone marrow biopsies – to see if there are cancer cells in the bone marrow

Once these tests have been completed, it will usually be possible to confirm if the diagnosis is neuroblastoma and determine what stage it is.

Stages of neuroblastoma

As with most cancers, neuroblastoma is given a stage. This indicates if it has spread and, if so, how far.

The staging system used for neuroblastoma is:

stage L1 – the cancer is just in one place and hasn't spread, and can be removed by surgery

stage L2 – the cancer is in one place and hasn't spread, but can't be removed safely by surgery

stage M – the cancer has spread to other parts of the body

stage Ms – the cancer has spread to the skin, liver or bone marrow in children aged less than 18 months

Knowing the stage of your child's neuroblastoma will allow doctors to decide which treatment is best.

Treatment and outlook for neuroblastoma

The main treatments for neuroblastoma are:

surgery to remove the cancer – sometimes this may be all that's needed

chemotherapy (where medication is used to kill cancer cells) – this may be the only treatment needed or it may be given to shrink the cancer before surgery

radiotherapy (where radiation is used to kill cancer cells) – this may sometimes be used after surgery to destroy any remaining cancer cells in the affected area

high-dose chemotherapy followed by a stem cell transplant – where stem cells from your child are collected, frozen and stored prior to intensive chemotherapy, and are given back to them afterwards

immunotherapy – where a medication that directly targets the neuroblastoma cells is given, although this isn't used routinely yet

Some babies and infants less than 18 months old with either stage L1 or Ms neuroblastoma who have no symptoms may not need any treatment, as the cancer can sometimes go away on its own.

The outlook for neuroblastoma varies considerably, and is generally better for younger children whose cancer hasn't spread. Your doctors will be able to give you more specific information about your child.

Almost half of neuroblastomas are a type that can return despite intensive treatment. Further treatment will often be necessary in these cases.

Support groups and charities

Being told your child has cancer can be a distressing and daunting experience.

You may find it useful to contact a support group or charity, such as:

These are good sources of further information and advice. They may also have local support groups in your area where you can meet up with other parents.

Clinical trials

If your child is diagnosed with neuroblastoma, you may be asked to take part in a clinical trial. Clinical trials are used to assess the effectiveness of different treatments.

If you're interested, ask your doctors about any trials your child may be able to participate in. You may also wish to search the database of clinical trials for neuroblastoma to see what research is currently being carried out.